Friday, August 31, 2007

The Improvements Keep Coming

Elijah is doing so incredibly well! Every day is such an inspiration and joy. Our little guy is being healed and we couldn’t be happier. This morning we were called at 8:30 am because Elijah had woken up. I rushed upstairs so that we could try breastfeeding. And we did it! It was a different nurse today who also happened to be a lactation consultant and she gave me some more tips which were helpful. He nursed for about 15-20 minutes and so that means he wasn’t given his meal via the tube. Now we just need him to do that every time for 24 hours and we can go home. That may sound easy, but unfortunately we’re still contending with that extreme sleepiness. He seems to wake up every six hours and then stays awake for two hours. I’m hoping that we can figure out his pattern so that we can get on his schedule and I can feed him when he is hungry and not when his scheduled feedings are. It’s so unnatural. Nothing about his life so far has been natural and that is so frustrating to me. I know that we’ll get there; I just need to be patient. Again, everyone seems impressed by his fast progress and I’m hopeful that a homecoming is in the near future. They seem to be trying to prepare us for it, so that’s good.

We were also able to nurse a second time today. So there were two times today that he didn’t get his feeding through the tube. This is really encouraging because I feel like we’re on the right track. The lactation consultant and the occupational therapist keep saying, “Well, as he keeps getting better…” He will only continue to improve.
The occupational therapist came again today and that went really well. Her name is Terry and she is just wonderful. You can tell she loves what she is doing and she is so sweet and gentle with Elijah. She tested all of the reflexes that babies have when they are born. He doesn’t have strong reflexes yet, but he is developing them. Before he was so limp, but as each day passes, he gets stronger and his reflexes improve. She showed us some things we can do to develop his reflexes and make him stronger too. It’s great to know he is doing so well and that there are things we can do to help him. It makes us feel useful. She also gave him hand rolls for when he is sleeping. He has a tendency to hold his thumbs in and this should help his joints from tightening up.

Elijah has been grasping at us a lot more which is really exciting. He was grabbing at Andy’s face and he reaches for me and has gotten a hold of my hair. He seems to be developing well. He likes to watch his mobile and look at our faces. He watches people and turns to look at people when they are talking. We’re doing our best to stimulate that little brain of his.

We left around 7:30 tonight, which is really early for us. We’re pretty exhausted and we need our rest. We tried to wake him up for his 6:00 feeding so that I could feed him before we went home. He had only been sleeping for an hour, so we were pretty doubtful that we would wake him up. He just fluttered his eyes a bit, but didn’t get into an alert awake state. He was simply too tired to eat. Andy held Elijah while I pumped and the little guy started to cry after awhile. Our bugging him did stir him. I took it as a really good sign that he is adjusting to the Phenobarbital and that he’ll keep waking up more. And the more he wakes up, the better he’ll be able to feed. It’s great because it feels like the nurses are really working with us to get us to go home. They pretty much let us do whatever we want. He is our son after all and they see that we’re there all of the time and that we’re working really hard to get him home. They take notes on everything. It really freaked me out one time when I told a nurse that my back was really hurting and the next day a different nurse mentioned something I could do for a sore back. They’re paying attention which is a good thing. The sad thing is that I don’t think that they see a lot of parents like us who are so involved in their children’s care.

Please continue your prayers. This has been the hardest thing we’ve ever had to do, but the future is bright and we know that God is caring for us and Elijah. Pray that he will continue to maintain his temp, feed better each day and wake up more. Pray that we’ll be going home soon. Happy Sabbath!

Thursday, August 30, 2007

Elijah is Surprising Everyone

Elijah seems to be surprising everyone who is working with him. We had an occupational therapist work with him today and she was very pleased with him. The doctor finally saw him awake today and she was also very pleased. When she left us today, she said, “That made my day!” Her saying that made my day as well. And his nurse said she was surprised by the progress that he has made so far and so fast. I am so pleased that he is doing so well. It is such a testament to God answering prayers.

So what did Elijah do today? He took his first bottle and did it very well. The occupational therapist came at noon and worked with him to get him to eat from the bottle. She seemed surprised at how well he took to it. She had met him yesterday, but it was during one of his conked out times. He was wide awake and alert for her today. He bottled 31cc and she said that she would have been happy with 10. Everyone seemed very excited about his progress. I guess I expect nothing less than fantastic progress from him. I’m his mom and I know what he can do and I know what God can do.

The lactation consultant visited me again today, but Elijah was sleeping when she came. She did suggest a video for me to watch and that really helped me. I watched it twice so that I could really get a feel for what it was trying to teach me. We got to try nursing at his six o’clock feeding and we did do a lot better. It was really encouraging. I actually got him to latch on well and suck and swallow. Yes! We can do this thing. And again, the nurse seemed surprised and pleased about how he did.
Tonight we are getting to stay at the hospital. We have a parent room and so it’s really great that we don’t have to go home. Right now I’m listening to the nurses shift change summary and it’s wonderful to hear them say how great he is doing. When the one nurse told the other one that he did 31cc for his first bottle feeding, she said, “Get out of town!” Life is good.

Elijah is waking up for every other feeding. He just woke up at midnight and we got to try nursing again. He did great. We’re getting the hang of it, we just need more practice. Andy and I really need to go to bed. We’re in our sleep room now and we’ve asked the nurse to call us if he wakes up in the night. It’s nice to feel like “real” parents. Please keep praying that he will continue to wake up more often, learn to eat quickly, and have a complete recovery. We know that God is giving us strength and the prayers help. Good night! :)

Wednesday, August 29, 2007

He Cried Today!

He cried today!! How could I possibly deny that God is answering my prayers and the prayers of those who are fervently praying for him? Hearing him voice his opinion has been my biggest wish of the last few days and God answered. He did it two different times today and I was so overjoyed. It wasn’t just a whimper, but an actual newborn cry. How encouraging. And he did it right before feeding times, which was great. I can’t tell you how happy I am today to hear his voice and have him communicate with us. God is great. (We did post a video of him crying, so check that out). He was also much more awake today. During his alert times, he was really awake for a long time. And even when he was sleeping he wasn’t in as much of a deep sleep as he has been. He would react to stimulus around him, but not wake up. I know that each day he’ll get even more alert and each day is a day closer to home.

I had a lactation consultant come and visit me today and she showed up right when I heard Elijah cry for the first time. I was so excited. And he was obviously hungry, so it worked out great. He stayed awake and alert for the whole time and things went well. The consultant seemed pleased with how he was doing. She said as he got better and healed every day, he should keep getting better at it. I kind of just want to take her home with me. I know that he can do this thing, but I do need the help. I tried to nurse him later on my own and it didn’t go as well as it did when the consultant was there, but I am encouraged by how well it went when I had her there helping me. Once we get the coordination of the whole thing down, I think we should be good. I had no idea how hard this would be. It’s going to take some practice, but I know that we can do it.

Elijah’s nurses seem to be surprised at the progress he is making and how fast. A few of them have taken a day off and they commented he was like a different kid when they returned. I have to admit I get a little anxious at times for him to get better sooner. Obviously that’s normal, but I have to be patient. I think I forget already how far he has come. I was looking at his pictures and videos from when he was first born this morning. We had no idea if he could even breathe unassisted. Now look at him! He’s crying and being awake a lot more. Yesterday we asked the doctor if we could try to get his Phenobarbital level lower and so last night and this morning they skipped his dosage. We’re thinking that is why he has been more awake for us.
Another milestone today is that we gave Elijah his first bath. Okay, it’s actually his second bath, but it was the first one given by us so that’s all that really matters. Now he’s all clean and smells so good. After the bath, Andy did kangaroo care so that we could make sure to warm him up. We’re still kind of concerned about his temperature, but it seems that he has been keeping it up at a safe level. Kangaroo care is so good because it gets him so warm. Elijah and Andy snuggled and took a little nap while I started this journal entry. They got nice and toasty. I woke Andy up at 10:40 because it was getting really late and we needed to go home. The moment Andy took Elijah off of his chest, Elijah started to cry. It was so beautiful! I love and hate to hear him cry at the same time. We couldn’t leave of course until he stopped crying, so we left really late tonight. (I write these posts on the way home from the hospital…and I post them as the day I’m writing about, even if it’s after midnight)

I can’t wait to read these journals and guestbook entries to Elijah someday. I can’t wait to tell him what a miracle he is and how much God has healed him. This experience has been such an example of God’s love and His care for us. I have been amazed at how I write in this journal about what Elijah needs and I ask for prayers and it’s happened more than once that the issue is resolved by my next journal entry. Thank you so much for all of your kind words and your continued prayers. Please continue to pray for Elijah’s complete recovery. We know that God can indeed heal him and it is quite obvious that God is listening to the prayers that are being sent up for little Elijah. We know he’s going to be okay and that God holds Elijah for us when we can’t be there. Pray that we’ll all be home soon.

Tuesday, August 28, 2007

Aching to Hear Elijah Cry

I never thought I would long to hear my son cry, but here I am, hoping and praying every day that he’ll scream and tell us how mad he is about the rough start he has had. And yet, I almost cry if he makes any face that indicates that he is unhappy. It’s not that he hasn’t vocalized at all. He does make some noise and he has definitely gotten upset. He looks like he is crying, but he doesn’t make the sound. When I was still pregnant, Andy and I checked out a video from the library called Dunston Baby Language. It helps you distinguish what different cries mean so you can tell if they are hungry, uncomfortable, etc. I want to be able to communicate with him more than anything.

We bought Elijah a mobile today and put in on his crib. He really seems to like it. He was watching it go around and seemed to get kind of excited about it. We posted a video of him watching it. It’s so great to see him getting some stimulation…I’m sure it’s good for his little brain.

Elijah didn’t seem to be as awake today as he was yesterday, which is a bit frustrating. He was probably awake for a total of four hours (if even that) and yesterday it was maybe six hours. Even when I say that he was awake for that long, I’m probably stretching it a bit since he drifts in and out of sleep. It’s so hard to deal with his sleepiness. I know newborns sleep a lot, but when he is in a deep sleep we simply cannot wake him up. Of course, this complicates things with his feedings. The good news is that we did better than we did yesterday. It seems that each time we try, things go a little better than the time before. What more can I ask for? Progress is progress. Things are complicated by the fact that he gets fed through his feeding tube every three hours. They’re feeding him a lot and that’s great, but I wonder if he even really feels hunger. What’s the point of working for your dinner if you can just get it for free in a tube that fills up your tummy? He does well; he just seems to lose interest after a little bit. We haven’t even been trying this for very long, but I find myself getting frustrated because we want to take him home so badly. I know that every day we get closer.
Please pray for him to communicate with us by crying and to be more awake at the right times to eat. Also continue to pray that he’ll be able to keep his temp up and his oxygen levels up. The doctor didn’t seem to be too concerned about these two issues, so that’s good. We also asked about possibly trying to lower the amount of Phenobarbital in his system, so the doctor decided to skip tonight’s dose and tomorrow morning’s dose. I hope that will help him keep awake longer tomorrow. Please pray that we’ll continue to make progress with nursing since that is really the only obstacle keeping us from going home at this point. And of course, pray for a complete recovery. I know that God takes care of him when I can’t be with him and He continues to heal him. Thanks again for all of your love and support. I really don’t know what we would do without all of you praying for us. Thank you!

Monday, August 27, 2007

Our Little Kangaroo

It’s getting pretty difficult to go home at night. Elijah is making incredible progress and we’re so in love with him that we never want to leave his side. Of course this is how any parent would feel, but I think we long for him even more based on how his life started out. When we got to his bedside today he opened his eyes right up and was looking at us. It was a great way to start out the day. He stayed awake for a few hours which was great. And he kept waking up periodically throughout the day. I think he was awake and alert for us three or four times and each time he was awake for an hour or for a couple of hours. The nurse was saying that he was having a more normal newborn awake/sleep cycle. I love to hear that. Pray that he’ll continue to wake up even more.
Nursing went better today. The two of us are working at it and it takes practice. I had a lactation consultant come and visit me and she gave me some really good advice. Elijah seemed to take to it more and I was a lot more comfortable after she helped. We definitely made progress from yesterday. He opened up wider and he definitely has the sucking ability, it’s just a matter of getting latched on correctly. It’s comforting to know that other women have trouble figuring out how to breastfeed as well. (It’s not just me!) The two of us have only been trying for about two days after all and we have to fight his sleepiness on top of it all. It’s hard not to get frustrated, but I’m really optimistic that we’ll be able to figure it out. (And then go home!). Pray that we’ll keep getting better at it and take to it really well. Pray for me to not get frustrated as well. Elijah and I got to do some kangaroo care tonight, which means we had skin to skin contact. I held him belly to belly with his head up toward my head. That was really the first time we had done this. I’ve wanted to do kangaroo care because I know how good it is for babies to have skin on skin contact. The poor guy couldn’t be held for the longest time because of all the stuff he was attached to. And then with his temperature issues, we had him all bundled up so it wasn’t really possible to hold him skin to skin. Elijah just loved being so close to me. He was awake for the entire time I was holding him and he kept moving himself closer to my head. He just seemed so content and awake. I think we were both on cloud nine. I cried a few tears of joy feeling his warmth next to me. We were together for more than nine months and we need each other! I was so happy to feel him squirming around and trying to move his head from side to side. It was probably nice for him to be on his tummy, too, since he’s spent most of his short life on his back. We’re hoping that we can do more of this tomorrow because it’s so good for him.
Elijah did hold his temp last night, although he tends to be on the cooler side. As long as it doesn’t drop too much, they won’t put him under the warmer. It’s possible he just runs a cooler temp, but we need him to be able to maintain the temp he has. We hold him a lot and that helps. His oxygen levels were dropping a little today too and so that scared us. They weren’t dangerously low, but they were lower than they would like. The oxygen levels would get better when we held him (he loves us!). Andy figured out that he was holding him more on his back. Since Elijah’s crib was elevated, Andy mentioned that maybe the angle of his crib needed to be lowered. They did it and that seemed to resolve the issue. We would like prayers that he’ll continue to maintain his temp and his oxygen levels will remain high. Thank you to everyone who has been so kind to us during this trial. My favorite scripture is Rom. 8:28, which says, “All things work together for good to those who love God, to those who are called according to His purpose.” I know everything is going to be okay because God said so and He can’t lie. This whole experience has been eye opening. It has made me trust and rely on God more. It has made me fall even deeper in love with Andy. It has shown me how much God loves us because I love Elijah so much. It has shown me how many people care for us. It has opened my eyes to what other people have been through. It has shown me that God indeed listens and answers our prayers. It seems that Elijah is doing better than the doctors or nurses expected. Last night the nurse seemed a bit negative and tonight when she saw how awake he was she seemed more positive and a bit surprised. God is healing our little man. Keep sending those prayers!

Sunday, August 26, 2007

Small Miracles

I’ve been thinking of small miracles today. Elijah keeps improving and he continues to amaze me. I kept thinking of the scripture today that says God was in a still small voice. I didn’t remember it was a scripture about Elijah until the car ride home. God has continued to comfort me and heal Elijah. And He keeps answering in a still small voice that Elijah is going to be okay. I was also thinking about Elijah’s name and what it means, which is: the Lord is God. Just like the Elijah in the Bible, I believe our little Elijah has proven his name time and again even though he is the tender age of 12 days old. God’s hand in his life so far is so incredibly obvious. People’s prayers are being answered and hopefully this can increase other’s faith that The Lord is indeed God. The Elijah in the Bible turned people to the true God and I feel like God has a purpose for our little Elijah as well. (If you’re curious about the still small voice scripture, it’s in I Kings 19).

When we got to Elijah today, we were told he had woken up a little for his morning feeding. That was great news. We were also told that he was a bit cold through the night and they were threatening to put him back under the warmer. We definitely don’t want that since it can be a neurological problem and might mean he’s not able to control his temperature. I hate to think of him needing to be under a warmer since it makes me think he’s like a McDonald’s cheeseburger. (Yes, I do still have my sense of humor!) The nurse thought she would give him one more chance to get warmed up on his own, so she bundled him all up and we held him for an hour while we prayed that he would warm up. When she took his temp again, it was in the range that they like to see, but still on the low side. His temp fluctuated throughout the day, but stayed in the normal range. We did hold him pretty much the entire day, so that kept him warm. Please pray that he’ll be able to stay warm on his own.

Elijah was also much more alert today and he was waking up at the right times…feeding time. He woke up for us at almost all of his feedings, which is really great. We tried to nurse again today, but we didn’t quite figure it out. It’s a learning process for both of us and I know that we can figure it out. I feel some pressure for us to get the hang of it so that we can go home. We could use some prayers that we’ll keep getting better at it and that Elijah will continue to have more awake times so that we can all go home. I can’t wait.
Elijah made more noise today which was cute. He makes little grunting sounds and he seems to be getting a teeny bit louder. He still hasn’t cried. He makes his cry face, but it never lasts for very long. He seems to be happy all of the time. I think he’s just generally a happy guy. Poor guy had a rough start, but he’s optimistic. I think that’s all for tonight. I need to go to bed, I’m exhausted! Thanks for your continued prayers. God has been listening and I am confident He will continue to listen.

Saturday, August 25, 2007

Transferred to the ICC

Elijah is an incredible little man. He did so well today and we’re so proud of him. He continues to amaze me. I know I’m his mother and I’m supposed to think this, but he is beautiful! And I seriously am madly in love with him. I love to watch Elijah with his daddy too. I can see how much Andy loves him and it warms my heart. Being a parent certainly does change you and I guess I didn’t know how much it really would. Elijah has the nurses wrapped around his finger too, because some of them request to take care of him. And some of the nurses laugh when I tell him what to work on over night. He keeps listening to me and keeps getting better day by day. (Okay, I know that I can’t really take the credit!)
Today when we got to the NICU, Elijah was all dressed up and the warmer was turned off. It was so great to see him all snuggled up in a blanket instead of just laying there under the warmer. The nurse had given him his first bath and then got him all dressed up. I’m sorry I missed it, but there will be plenty of time for more baths.
The great news is that Elijah was transferred from the NICU (Neonatal Intensive Care Unit) to the ICC (Infant Care Center) today. This is the next step to going home. The ICC is so much better than being in the NICU. Elijah is now in a crib and shares his room with one other baby instead of five babies. There is one nurse per room and the two nurses we met today were really great. The atmosphere is much better being that there aren’t sensors constantly going off, there is a window in his room, it’s so quiet, and it seems more like home. I feel much more comfortable leaving him in that environment.
Elijah was sleepy for most of the day today. He has been put back onto Phenobarbital since his levels have come down. I wish he could be off of the drug because it does make him sleepy, but we certainly don’t want the seizures to come back. The doctors compared it to taking Benadryl in that at first it will make you sleepy and then after a few days or a week most people will get used to it. I believe they want him to take the drug for his first two months of life. I’m hoping Elijah will start to wake up more often. I know newborns sleep a lot at first, but we need him to wake up when he’s hungry so that he can eat. Today Elijah did just that. He gets his feedings every three hours and so we try to be there before those times so that he can attempt to eat. At around 5:45 tonight he woke up and was alert for almost two hours. We attempted to nurse and it went well. His nurse said that it was a very good first attempt and how it usually goes the first time around. It’ll take some learning but I know that the two of us can figure it out together. I’ve never done this before either, after all! This is the only hurtle that is preventing us from coming home at this point. If he can’t figure out how to nurse, then they would try a bottle, and if that doesn’t work, he would need a feeding tube surgically placed in his belly. Of course we don’t want that and based on today I’m sure he’ll be able to figure out how to nurse. He’s a smart little guy.
Other fun things that happened today were that he made a bit of a crying noise with his crying face and he did it shortly before one of his feedings. This should indicate that he might be feeling a little hungry and should help him wake up to feed I hope. Another thing he did was suck on his hand a bit. We also noticed that he really seems to watch what is going on when he is alert. We have a really good video today (that I posted below) when he was in his alert state. He was watching Andy while he was videoing and he looked at his hand when I was touching it. These are all great things in my mind because it shows he has some self-awareness and awareness of his surroundings.

Elijah’s temperature has been lower than they want it to be today. He did just get taken off of the warmer so I’m hoping his body can figure out how to stay at the proper temperature. Please continue to pray for our little man. I absolutely know that God is listening. Elijah’s daily progress is proof positive. Pray that he and I can figure out how to nurse. It seems the doctors and nurses have been kind of doubtful that he could do it, but I know that he can. Today was a step in the right direction. We need him to wake up when he’s hungry and we need him to “talk” when he is unhappy. I never thought I would long to hear my baby cry, but I have to admit he made me cry today when he made his crying face. I just want him to be happy. He is our little miracle man and every day I am overjoyed that God gave him to us.

Friday, August 24, 2007

Now We're Waiting

It was so incredibly hard to leave Elijah tonight. Of course that’s hard to do every night, but it’s only going to get harder since he is doing so well. I feel so blessed to have him in our lives. He has shown us so many things and increased our faith so much. And he’s shown us how many people we have in our lives that care about us. Writing this journal every night gives me a bit of a release and I’m glad that I can keep everyone informed about his progress. Hopefully his story can increase the faith of others as well. And I know I say this every day, but the guestbook is so encouraging and uplifting. Please continue to write and continue to pray.

When we first got to the hospital today Elijah was pretty tired. He wasn’t responding very much and to be honest I was a little bit worried. It doesn’t pay to worry because Elijah is an amazing little man. He was awake and alert for a really long time today. Yesterday he would just barely open his eyes and it wasn’t for very long. After holding him for awhile, he finally started to wake up and open up his eyes…and for an extended period of time. He opened up wide this time and was looking around. He seemed to look in the direction of the person that was talking with his beautiful blue eyes. This is so encouraging to us and wonderful to finally see him awake.

Elijah is being fed quite a bit through his feeding tube and they keep increasing the amount of milk that they are giving him. He is taking to it very well. He is continually being more and more unhooked. Tonight they took him off of his IV which supplemented the breast milk and now he is getting milk exclusively. Now the only thing that he is connected to is sensors that measure his heart rate, respiration, and blood oxygen levels…and the feeding tube in his nose. It’ll be great when he has nothing attached to him but his parents.

I didn’t get to nurse Elijah today like I had hoped. He just wasn’t awake when the time came to try it out. Poor guy, we’re always trying to wake him up. He’s been through a lot and his brain needs an opportunity to recover. I’m really hopeful that he’ll be more awake tomorrow and we’ll be able to learn how to do it together. They have stopped feeding him continuously and instead give him a normal feeding over 30 minutes every 3 hours. This is so he can start to have the sensation of hunger like any baby would every few hours. This should help him have the cues to want to feed and should help with him wanting to nurse. The doctor told us that the next obstacle to overcome is to get Elijah to start eating and then we’ll get to take him home. This is really great news. We’re getting a lot more involved in his care and that feels really great. It’s starting to feel like he doesn’t really belong in the NICU. The doctor said we’d be moved to the ICC soon, which is a bit more of a homey atmosphere. We just need him to learn how to eat!

The doctor seemed pleased with Elijah’s clinical progress. She even said, “Keep proving those tests wrong Elijah.” Even Dr. Gloom was better today. He said something to the effect that he was glad to see him doing so well. I think this means Elijah is doing better than he expected. God sure is great! Elijah continues to amaze us.

A new thing today was a “cry face”. He would scrunch up his forehead and pout his bottom lip telling us he didn’t like something and wanted to cry. He never did it for very long and he’s so cute when he does it. His throat is probably still pretty swollen from the respirator and so it would be hard for him to make any noise. This is yet another thing we would have probably taken for granted if things had gone as expected. Now I can’t wait to hear him cry. It would be music to my ears because I’ve never heard him cry. He is making little noises and it’s so nice to hear.

So, now we’re waiting on learning how to eat, hearing him cry, and having him have more awake times. Please pray for these things and for him to have a complete recovery. I know God can heal him and make him all better. All I know is, we’ve fallen madly in love with him…it’s hard not to.

Ups and Downs

I think that I’ve experienced every emotion imaginable today. It ranged from sorrow to joy, guilt to anger. Thankfully, today, just like all the days before, I left Elijah’s bedside in a really upbeat and positive mood. He is such a strong boy and I’m so proud of him. I find myself asking why this had to happen and why us. But, then I tell myself why should it happen to anyone? Of course it shouldn’t. Life certainly isn’t fair and I’m not just learning that now. This isn’t exactly how I expected to spend my first few weeks as a mother. I feel robbed a bit because I thought that I would be home right now with him soaking it all in. I love our little man and so does Andy (and I know a whole lot of other people do too!). He is such an inspiration. It’s just that he’s been through so much in his short life already and all we want to do is protect him.
Well, we got the MRI results today and the news wasn’t what we had hoped. The neonatologist said that the back part of his brain is damaged on both sides and that his whole brain was affected to some extent. The neonatologist and the radiologist thought that the damage was moderate and Dr. Gloom told us it was more severe. Just goes to show that the results are pretty subjective. As you can imagine, this news was not easy to hear and it put Andy and I in quite a negative state for awhile. The truth is, we really have no idea what this means and neither do the doctors. They said it could mean that he’ll have problems with his coordination and learning disabilities or cerebral palsy. We shed our tears as we considered the worst case scenario and asked ourselves “what if…” It wasn’t a fun time to put it mildly. We’ve stopped trying to guess what will be wrong and focus on what is going on right in front of us…which is a beautiful little boy making incredible progress. I know that God has already intervened for Elijah and will continue to do so. After all He loves Elijah more than Andy and I ever could.
Elijah opened his eyes for us right away when we got there this morning which was a great way to start the day. We kept telling him all day “open your eyes buddy.” Poor guy probably didn’t get any rest we bug him so much. It’s so comforting to see him move and open his eyes that we keep pestering him. He doesn’t really seem to mind all that much really. He opened his eyes several times for us today. Just like any other baby, he seems to go through sleeping and awake times. We love seeing those eyes and can’t wait to see them even more tomorrow.
Great news today: Elijah is off of his respirator and is doing really well. His oxygen and carbon dioxide levels are good, so he is breathing well without it. Before they took it out, he was pulling at it and really seemed to want it out. He’s a bit raspy from having the tube down his throat almost since birth, but he is swallowing well and dealing with his secretions well (there is a concern with brain damage that he would choke on his tongue or not be able to rid himself of secretions- which isn’t the case at all). In fact, he is making fantastic sucking motions and sucked on our fingers quite vigorously. He also turned to Lisa like he wanted to nurse. These are all great signs. The doctor said we could try nursing tomorrow and I’m so excited. Every day he makes incredible progress. Also, both Andy and I got to hold Elijah today twice. He is much less connected to the machinery and so that makes it a lot easier. I’m sure that now we’ll be able to hold him a lot more So, it’s been a day of ups and downs, but we still leave the day with a positive attitude. Elijah has brought us so much joy in our lives already and I’m starting to forget what our life was like without him. Pray that he takes to breastfeeding well. Pray for a complete recovery. Pray that he’ll have the same chance in life that everyone else does. God has certainly been listening to you all and I have faith that Elijah will continue to improve. The test looks bad, but the boy in front of us sure looks good. That means so much more to me than a test. And, I know that anything is possible with God’s intervention. One way or another little Elijah will be okay. I know that.

Also, I wanted to mention that we created a Photobucket account. The CaringBridge site only allows 12 pictures, so we’ve been uploading more photos and even some videos to the Photobucket site. You can find a link to it under Links on the top tool bar. Keep praying!

Wednesday, August 22, 2007

Improvements Despite a Difficult Day

No wonder Elijah didn’t want to come out of my belly; it’s a rough world out there! We knew today was going to be a bit trying since he was going to have his MRI today, which meant they had to sedate him. So, finally when we get to see him making some progress, they made him lethargic again. We didn’t rush to see him today since we knew he wouldn’t be responsive and we couldn’t go with him to the MRI. When we got to see him after the MRI, the nurse said that he gave them a bit of a scare, which of course made our heart drop a little.

Elijah has been breathing pretty strong the last couple of days and so they turned down the respirator to prepare him to breath without it. Unfortunately, the sedatives make it nearly impossible for him to breathe on his own and the breathing tube he had was too shallow, so he stopped breathing just as they were about to begin the MRI. Luckily, they were closely monitoring him and the respiratory specialist was right with him. He did turn a little blue, but the doctor said that his oxygen levels were still at a safe level. He was immediately given a new breathing tube and was fine, but Andy and I couldn’t help but worry a bit about it this afternoon.

It was difficult for us to wait until he started to wake up, which seemed to take longer than we thought it should. He still has pretty high levels of Phenobarbital (anti-seizure med) in his system and so that is why it took longer. We’ve been so excited to watch his progress each day and it was so frustrating to just watch him lay in his bed again.
The good news is that I got to hold him again this evening. We were thinking of going home, but when asked if I wanted to hold him, of course I couldn’t refuse. Before Andy and I were only allowed to hold him for 15 min. each on different days. I assumed it would be the same tonight, but I got to hold him for an hour and a half! It was so nice to hold him in my arms and wow is he heavy. Since I only thought it would be a short session, I opted to not use a pillow underneath him and my arm literally fell asleep! He is definitely a big boy.

He slept in my arms (still wasn’t responding much from the sedatives) and it was so nice to hold him, which I have obviously been aching for. I sang him songs and tried to give him some advice. I thought I would sneak it in while I have his full attention. Near the end of the time that I was holding him, he seemed to start to come out of his sedated state. He started stretching and moving around. It was like he wanted to change positions, which I couldn’t really do because of his respirator. I would’ve liked to change positions because I was starting to get uncomfortable too, so I understood how he felt. He started to lift his hand and place it on his respirator as if saying he didn’t like having it in there (don’t blame him!), touching his face a little, and moving his head to the side. I hadn’t seen him do these things the day before, so it was really encouraging. He made improvement despite all he had been through today.

I saved the best news for last: He opened his eyes! It was time for Andy and me to go and so the nurse placed him back in his bed. He opened up his eyes to see what was going on. He just blinked a bit and seemed to think the lights were too bright. Andy and I were so excited. Every day he gives us a little something and today was no exception. It was a really good note to go home on…to have been able to see those beautiful eyes. I’m so excited to see more of them tomorrow. Also in the good news department, they are going to try to wean him off of the respirator in the next couple of days. We pray he does well with it since it would be nice to get him unhooked from the machinery and doing well without it.

I suppose some of you are wondering about the MRI. Well, so are we. We’re supposed to get the results sometime tomorrow. I hope and pray that it is good news. Please continue the prayers. I know I repeat myself every day, but this site has been such a comfort to us. Keep commenting on the guest book. We read it throughout the day and it gives us such a boost to know that so many people are thinking of our little Elijah and us as well. We really appreciate all the comments and all the prayers, so keep them coming!

Tuesday, August 21, 2007

A Different World

This whole experience has catapulted us into a completely different world. Sometimes we can be completely oblivious to the fact that people suffer and that includes babies. There are so many babies in the NICU and most of them are preemies. It’s so sad. Our little Elijah doesn’t seem so little compared to all the other babies. In fact, he seems like a giant. And he looks so strong. We know he is strong.

Every day is a little bit better. Baby steps for a baby, right? Elijah was even more active than he was yesterday. He’s reacts a lot more to us. He has been yawning and stretching a lot. He even made a little bit of noise with his yawns. I can’t wait to hear him cry…and do all those things that we would’ve taken for granted if he were born with no complications. He tries to pull his limbs away if we do something that annoys him. Lisa’s hands were cold when we first got there and he seemed to be annoyed that she was touching his arm. It’s a very good sign.

He was also making a sucking motion with his mouth which was great to see. Hopefully he’ll be a good eater. I even got him to suck on my finger a bit. He is getting a continuous feeding of breast milk now (through a tube that goes in his nose to his stomach) and he is doing well with it. His swelling has gone down and he has lost some water weight, which is good. We can see his eyes moving under his eyelids and it seems he is trying to open them. We can’t wait to see his beautiful eyes.

I got to (HA!) change Elijah’s diaper tonight. It was the first dirty one I’ve changed (number one and number two). I feel silly talking about what’s in my baby’s diaper, but it’s such a good sign in terms of his progress.

We’re so proud of him because he makes such incredible progress every day. The MRI has been rescheduled for tomorrow. We’ve been told that because of the amount of oxygen deprivation Elijah experienced at birth he will most likely experience some sort of brain damage. Of course, that isn’t very easy to hear, but we remain really optimistic. He is making such progress and God’s hand has obviously been involved. Besides, the doctors really don’t know what the end result will be. At this point, some neurons are dying off and some are rerouting themselves. Babies are pretty resilient and obviously God can heal him.

Please continue your prayers for our little guy. Pray that he’s able to be breathe strongly on his own (they don’t want to take out his respirator until after the MRI), that his MRI shows minimal damage, and that he continues to make improvements. We can’t thank you all enough for all of your encouraging words and even more for all of the prayers. God has been listening to you all. “The effective, fervent prayer of a righteous man avails much.” (James 5:16)

Monday, August 20, 2007

Gagging, Stretching and Yawning

Today has been a good day for Elijah, but not for daddy. Andy has not been feeling well today and had to stay home and get some much needed rest. It's been really hard for him to be away from little Elijah today, but it's really important for him to get better.

This morning mommy and grandma Teri drove in to see Elijah and we were so pleased to see him moving about this morning. He was stretching and yawning and it was so cute to watch.
We visited him later and he was pretty sedated again. I figure he was just in a deep sleep because later uncle Andy came to visit and he was showing off for his uncle. He was stretching a lot and yawning and moving his arms a lot, which he wasn't doing yesterday. He'll arch his back and stretch out his legs and arms and it's so great to see him making improvements.

The doctor came to see Elijah while uncle Andy was visiting and gave us some good news. She was glad to see Elijah making so many movements. And great news: He gagged today. I know that sounds funny, but it's pretty exciting. The doctor and RN moved his resperator and his gag reflex kicked in. He was flailing his arms and legs and I could hear him gagging a bit. He was showing discomfort, which is definitely a good sign. Also, they're starting to feed him some breast milk this afternoon. That should help him.

I just got news on the EEG. It looks better than last time and there are no signs of seizures. The EEG also measures the way eletrical brain activity is organized and the neurologist said it looked abnormal...whatever that means. I have come to not like this man because he has become "Mr. worse case scenario man" to me. As far as I'm concerned, things can improve and he makes it seem like that's not possible. Anything is possible with God. We could use prayers that his brain function will improve and that his MRI (which is scheduled for tommorow) will show some good news. Thanks to everyone for all of your comments and prayers. They have been such an incredible comfort to us so keep them coming! We know that God has been listening.

Sunday, August 19, 2007

Elijah is as Cute as Ever

Elijah is as cute as ever. :)

He is still heavily sedated from all of the anti-seizure medication that was given to him, but it seems he makes small improvements every day. Yesterday he was pretty unresponsive to everything, but today he seemed to respond a bit more.

We were able to get a few smiles out of him, which was so encouraging. He curled his toes a little when we touched his feet and his eyes have been moving as if he wants to open them, but he doesn't quite open them yet. We're hoping he'll open those beautiful eyes for us tommorow. He's also been arching his back and stretching a bit today which he wasn't doing before.

We get to take his temperature if we want and we've changed his diaper a couple of times. I'm sure we won't be as excited about that in the future. :)

When we about to leave tonight, both of us gave Elijah a kiss on the forehead and he smiled. We told him he was doing a good job and "baby talked" a little bit and he seemed to respond to that too. It was a good note to go home on and we can't wait to see him tommorow.

He has his EEG in the morning and we want to be there for that. Every day we hope for more changes as the drugs wear off. Pray that he can regulate his temp, breathe strongly on his own, and gets his gag reflex. We love that little guy!

Elijah on his birthday

Saturday, August 18, 2007

Holding Our Son

Yesterday Lisa got to hold Elijah for the first time. Awesome!

Tonight it was Andy's turn and he got to hold his handsome son for the first time.

We can't wait to hold him again and love spending time together as a little family.

Tuesday, August 14, 2007

We Meet Our Little Man

Andy and I were so excited to start a family and were thrilled when we found out I was pregnant. I loved to feel the baby move around in my belly and daydreamed about what our child would be like. Would we have a boy or a girl? Would he or she be blond or brunnette?

August due date came and went and I was still pregnant. And then, we finally got to meet our baby. It was a boy!

Elijah James was born on Tuesday, August 14th at 10:58 PM. He was a whopping 9 lbs. 3 oz. and was 21.5 inches long. We were thrilled to finally meet the little one we had gotten to know for over nine months.
Unfortunately, the labor hadn't gone as planned (to put it mildly). After over twenty-four hours of labor, our poor boy had been through a lot and suffered from oxygen deprivation. He was born via emergency c-section and wasn't breathing. The next day he was transported to Children's Hospital. He had continuous seizures for a couple of days and was in a coma for over a week. He spent the first three weeks of his life in the hospital. Getting our boy home, however, was only the beginning of our journey.

This blog is Elijah's story, as told through my eyes. It's a story of overcoming the odds, putting trust in God, and the miracle of prayer. This is our family's story. Welcome to "Elijahland"...
Related Posts Plugin for WordPress, Blogger...